Dipping my toes back in…

I’ve been riding a low wave lately. I’m coming up on the year anniversary of losing my dad to COVID19. I continue to have feelings of anger, heartache, disbelief, and utter grief. Honestly, most days, I struggle to get out of bed. I took a huge chunk of 2021 off to work on myself. To heal mentally, physically, and spiritually. I don’t feel like I succeeded. I feel like I am still walking the edge of hanging on and falling off the ledge. When I say edge, I mean crawling into my bed and staying there for a long period of time. I can’t do that, and I guess I need to be grateful that my responsibilities push me to get up and go one day after day. I have a lot more work to do on that front.

In August, I took myself off of hiatus and started to dip my toes back into the world of advocacy again. It turned out I did more than dip my toes. I was a bit overwhelmed by all the opportunities I was fortunate enough to participate in. Here is a quick wrap up.

In August, I got to sit in on a patient panel for WegoHealth titled: The Great Collaboration: How to Open Your Advocacy Up to Partnerships with 3 amazing patient leaders Cathy Chester,  Jasmine Souers, and Marissa Thomas. Our discussion focused on how to connect with other advocates to elevate your advocacy and partnerships. It was great having a robust conversation with other patient leaders to learn from their experiences. Check out WegoHealth’s video patient panels. They bring a lot of amazing people together to build the patient leader community.

That panel discussion introduced me to Joey Sooch. Joey is an amazing man living with FOP, a rare disease that causes his muscles, tendons, and ligaments turn into bones and lock his body into place. Joey is a patient leader who runs a youtube channel and video podcast where he interviews others on a variety of topics. You can watch our discussion here:

Thank you Joey for reaching out.

I was honored to be asked to speak at the Global Genes Rare Patient Advocacy Summit. I joined Trishna Bharadia and Christian Rubio to discuss “The future of engagement is hybrid (and expensive).

The past year has forced almost all organizations and nonprofits to reevaluate their approach to patient education, community events, and conferences. As we look to the future, the imperative to develop robust virtual and hybrid approaches across the board is clear. Join us to discuss these impacts and key tactics for advancing your digital/hybrid programming.

  • Understanding what technologies and tools can drive the most value for your organizational goals
  • Identifying technology partners who are affordable and user friendly
  • Impact and insights on pivoting programs, communities, and events to virtual
  • Addressing challenges in online engagement, the digital divide, and community burnout

I was so honored to participate in this global even. Thank you to Global Genes for considering me for this event.

Finally, I was asked to be one of 54 patients to represent the 54 million people living with an arthritis disease during Invisible Illness week with the American Arthritis Foundation, and Rising above Rheumatoid Arthritis. The topic is “Shining a light on life with arthritis and disability during the COVID19 Pandemic.” You can watch this moving video here.

It’s been invigorating participating in these advocacy events. I hope to do more in the future. It was good to focus on my passion for advocacy for a while.

I’m also back with AiAthritis.org. The non-profit I helped to cofound back in 2013. If you haven’t check out our new AiArthritis project platform, make sure you check it out. Exciting things are happening. https://aiarthritisvoices.site

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

2 thoughts on “Dipping my toes back in…

  1. Wow, I will need to get your autograph. You are getting famous. I love speaking on panels. Congratulations on doing so much !!! That is awesome.


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